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Thank you for visiting!

Saturday, August 21, 2010

Dinner... on hold

Thank you all -- Matt and I both really appreciate your comments.

We, too, were a bit disappointed that the focus of the ABC program was so narrow, but they clearly wanted to fit our story into their theme for the program "The Brain and Love". We think it unfortunate and misleading that narcolepsy was portrayed as being "strange" and "rare". We really did try to communicate that it is surprisingly common (1/2000 individuals suffer from narcolepsy), and that informing others about this was the reason we said "yes" to doing the program.

Matt's case is a bit atypical in that the cataplexy is more debilitating for him than the excess daytime sleepiness is, especially when he is on his meds. We had about 10 weeks at the beginning of the year when he had trouble getting the anti-cataplexy medication (insurance company change) and that hit him very hard. After the first week or so he was unable to work and what work he did do was pretty much done from home. I hope we don't have a repeat of that this January!

So, about the meds (he has worked really hard to get the right type and balance of stimulants and Tx for cataplexy): he mostly does OK in terms of sleepiness (needs very few naps) and the cataplexy is pretty well controlled for most triggers.

The one trigger that overwhelms him still is very strong positive emotion. We had friends over for dinner last night (first time since last Thanksgiving!) and after visiting with them for about 20 minutes, Matt had to go lay down and was out for about 90 minutes. I had roast chicken getting cold on the counter, pasta water boiling away on the stove, muffins baking in the oven... and was really thankful I had thought to throw together some appetizers. The three of us chatted and snacked until Matt was able to get up again, then we ate dinner in stages, since the chicken and muffins were done but the pasta still needed to be cooked and tossed together.

Some of you had questions for us -- I am on day #2 of a migraine, and have to limit my time at the keyboard, but I will try to get back to you in a day or two.

Meanwhile, thank you for understanding.  And if you get the chance, please go hug someone you love for me. I'm gonna go cuddle the pup for a bit :o)  Isn't she just the cutest puppy ever??!!


  1. Hiya Trish,
    I thought the segment about you guys was great... but yeah, way too short! Of course, we're biased though. :O)
    I was so touched by your story and I loved seeing the old wedding/family memories - that was really neat.
    I mentioned your story in my post about taking wedding vows seriously. You're a perfect example.
    Kudos to you both for getting the word out!

  2. Dear Trish,

    The love you share is more than many of us will ever have. I see you are able to enjoy the good parts!.
    Regarding Matt's meds : From experience I can recommend Sodium Oxybate (Xyrem) especially for Matt's cataplexy. Has he ever given it a try ?

    Hope you keep blogging ! D

  3. Thank you both!
    @ Nwife: I think we are really lucky to have each other! I was married once before -- that relationship would not have made it through these stresses.

    @Anon: yes, thank you for the advice -- Matt has been fortunate to finally have a scrip for Xyrem. He's been taking it for about 18 months (I think) and it makes a world of difference When he forgets to order it or it' delayed for some reason, he is much much worse. This has sure taught us both something about how very important it is to get the right treatment!

    Hugs to you both, and thank you for your encouragement. <3


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